I know I promised more detailed posts on our August adventures, but first I there are a few things that have been on my mind . . .
1. I'm thirty-three years old and I will be in pain everyday for the rest of my life. I will wake up in pain, move through the pain (when possible), and then go to sleep with my pain. Each morning the first thought that registers in my mind is, "ouch". I am SO tired of being in pain and having to find a way to live as normal a life as possible - I want to have fun with my family/friends, I want to work to contribute more to my family, I want to ride roller coasters and horses, I want a break from this pain, I want to be better. I don't sleep well, due to pain and nerve/brain damage I never reach REM sleep which is the deepest, most restful stage of sleep. I'm just getting tired. I know it seems like I am so positive and appreciative about my life, but even I have my moments when it all seems hopeless and impossible.
2. Monday morning Logan woke up to the sound of me puking up my undigested dinner from the night before. It was early, and I didn't think he was awake so I used his bathroom since my husband was in our shower. He was awake, he did hear me, and it makes me so sad. . . Logan is aware that most mommas do not have brain surgery, come home multiple times with several staples holding surgical wounds closed, or puke undigested food from dinner the night before. He knows when I'm hurting more than usual, he knows when I can't eat because I'm nauseated, he has seen me in the hospital connected to all the tubes and wires - all of these things make my heart hurt. This is not the life I wanted for my son. . . I think most all I want him to not have to see his momma sick anymore.
3. There is a stigma with being a chronically ill, legally disabled, pain patient. (Now, you need to know I am no longer on any of the really "good" pain meds and I no longer see doctors that are at pain clinics or specialize in pain treatment - some would not classify as a pain patient anymore. I do not like pain medications, or any medication for that matter.) Sometimes when I'm at family gatherings politics may come up and in the past comments have been made about whether or not US citizens should have to "pay for other people's lives". There have been many instances of similar conversations, but I think you get the idea. My point is that I worked as long as I physically could - when I got sick I had been to school, built a business, gotten married, built a home, and started a family. I did EVERYTHING I was supposed to and my life literally fell apart when I got really sick. I didn't do anything to cause my disorders, but I have been treated like a lower class citizen by several people because I don't have a job, or I am on medicare. When our lives fell apart and a lot of our remaining income went to medical care/treatment it was my doctors that encouraged us to apply for Social Security Disability. (By the way, we were twenty-four and twenty-five years old with a one year old baby.) I don't think we had a choice, and I don't feel bad about taking it, even though some out there probably think I should. I guess what you should get out of this is that you don't know what you would do when your life disappears and your future is forever changed. You don't know what its like until you are staring in the face - I've always felt like heart surgery, cancer, brain surgery, and anything lifelong or terminal are kind of like exclusive clubs . . . you just can't know what is really going on inside until you join one. Try to remember, this is not an equal opportunity world, and some of us got the shit end of the deal.
4. When you see me, please do not assume I am healthy or feeling good because I am pretty and wear a smile on my face. One of my doctors, the horrible one that left me without my pain patch cold turkey, once said, "you just LOOK so healthy, its hard for my staff to understand." I will never forget that statement. If nurses in a neurological office thought I was too healthy for the level of treatment I was receiving, then what were people that didn't have my chart and a medical background thinking? I look this way because my body stopped digesting food properly and I have to maintain some level of physical therapy to strengthen my muscles so my degenerating joints/discs have more support. Not to mention that gaining weight is not an option, according to my many doctors it would triggeran array pain, back, and joint issues. So, I am truly sorry if I "look healthy and happy", but I choose not to let the whole world see me vulnerable and in pain. . . even though that is who I truly am.
Well, sorry for being such a Debbie downer, but sometimes this is how I feel, sometimes it is just too hard, and I'm trying to be honest about my life. Don't worry about me, I'll get up, do my physical therapy, and put on a happy face. The alternative is to lay here, feel the pain and nausea, feel sorry for myself and stay miserable while life passes me byand I just can't let that happen! Have a good day, and thank you for reading my venting - I'll try to be a little more upbeat next post!
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